Difficulty walking after Implanation of stimulator.

Dee, both me and my husband are sitting with our jaws wide open, what gives? So they take your insurance companies money and then they just leave you, that is bull hawkies. Who knows if they have tried all of the settings, what about starting all over since the swelling has gone down. You made waves and now they don't want to talk to you and just want you to go away. 

My Rep just told me last week that it could take anywhere from 6 months to a year. How could my Rep be telling me that it will take up to a year when your rep is dropping you after just a couple of months? 

If you are on Medicare then please contact your regional office of Centers for Medicare and Medicaid. Have all of your information and take good notes and dates together and ask them to investigate this as Medicare fraud. If you aren't on Medicare then contact your insurance company and have them investigated. This is wrong, wrong, wrong.

I am furious with the way that they have treated you, we have been in such horrible pain and your rep has no compassion and needs to find a new job. Don't let them give up on you, you deserve better than this. They have given you a grave disservice and at the bare minimum you might want to contact an attorney.

Just how many times have they adjusted you? There is no way that they have done "all of the settings" It is just not possible. If that was the case then why were we told that it could take a minimum of 6 months? You have only had that thing in for a little over 2 months, 

I am so furious that I am shaking mad, they are trying to get you while you are down, don't let them. I need to take a break for a few minutes because I am just flat out mad at them. I might start swearing on here and that isn't appropriate.

I am sending you a big hug Dee, pershaps Lynn has an idea on what to do. I have my 3rd adjustment tomorrow which will be my 5 week mark.

Dianne

Dianne please don't go postal and pop a blood vessel.

I have had 5 re programs since 3/2.  I am a little upset about this myself.  I called and texted his supervisor, and here Lynne would be proud of me, I was cool, concise, and only asked one question, "how many variations and combinations are there.?"  Here verbatim was her answer, "This needs to be worked out between you, Matt and your surgeon.  This therapy works for many but not for all.  I wish you the very best."  I say this is a cya moment.  Me reply was as follows, "Thank you.  Was just curiois as to how many variations there were on the paddle.  Have a good night.  Here is her final answer, "There are many but xxxx (his name) has been with us for nearly a decade.  He is one of our most tenured programmers."  My final reply went as such, "Yes he is and I am grateful for all he has done and all he has tried to do."  I also mentioned how he had to work without a full team, making him the only one available for everyone. 

Now Dianne no where in her response to me did there appear any mention of a # of combos.

So I sit here pondering my next move.  Feel like I am playing a freakin chess game and they have me boxed in with a check mate.  I just got the print out of the price of this stim that isn't working.  Holy cow.  There is no way on God's green earth, will they pay for another trial or surgery.  So I am left twisting in the wind.

Called my sister to vent quietly no going off on a tangent.  She says to me, "Now will you pray to  St. Jude?"  Guess I have nothing to lose in asking for some help from the Lord and his Saints.  I am glad to read that you are getting your help.  Glad two triplets are on the road to recovery.

Tell your hubby, that I am the first to say this is not working.    LOL. I shall take your hug as  right now as I could sure use it.  Thanks for the support from you and Lynne and all the others.  Continued good luck on your journey.  I shall be watching from the side.  I see the surgeon in two weeks.  In the meantime no driving or leaving the house.

Dee

Just this quick response before I forget because my brain is Swiss cheese from all of the anesthesia that I have had in the past 6 years.

1.  Write down everything in a Word document, from start to finish, everything no matter how small you think that it is.

2.  When I meet with my Rep tomorrow I am going to casually ask just how many combinations that there are.

3.  They are CYA all right, they are thinking that you are going to be suing them. That is why you need to take detail notes, what was done on what dates, who was there was was said, etc. Did I ever tell you that I was a criminal court manager? This isn't a criminal case but many of the things that transpire need the same type of evidence gathering. It doesn't matter if you do or don't plan on doing anything, it is just important that you do it. Promise me that you will do that.

We haven't heard how much my stimulator cost, I had heard a while back that it could have been as much as a hundred grand, am I correct?

BTW, if I haven't busted a gut yet in my life so I doubt that I will now. I still think that they did wrong by you and I want to punch them in the nose. Does that mean that I will only have 2 more adjustments after tomorrow? No, you spoke up and they didn't like it, the Rep thought that he/she didn't have to put up with you because they have a lot more people to deal with. 

It is theft plain and simple on their part, please don't let them get away with it. I want to keep in touch with you, but I don't know how to do that here. Any idea how? Oh wait, you are going to fight this and not give up.

Dianne Gruber

I guess right now Dianne feeling sorry for myself.  But in a day or so, I will get my dander back up and look tomsee

oops hit the send key instead of the back key.  LOL talk about no brains haha.

Funny you should say to keep records.  I did that today writing it down in date order.  Have saved all texts, the ones I have.  The cost for the implant was about $25-28,000 for mine.  Don't know about elsewhere.

I wish I knew how to fight this.  I need more info from the surgical aspect and from the pain mgmt. team.  Tomorrow I will call both surgical and pain mgmt. and move up my appointments.  

No no you did not tell me about your previous job.  Oh are you on Facebook?  If you are, I can find you.  Or we can private message on here.  Phew I thought I lost my post.  God to have to re-write this.  Oh no I thought.  Haha

My surgeon's team and pain mgmt already know how difficult it has been to get to see him.  I guess in their defense, if there is one, they would say, well you have had more consults in such a short period of time.  My response would be then for every patient within the first two months having 5 adjustments, that's it.  I just can't believe that.  I don't know the answer.  I can PM you my phone number and vice versa, if you want then I can speak more openly with out going to the wood shed,  hahaha.

Keep me current on your visit tomorrow.  Thanks for the hugs.  Sending one back my friend.  You hang in there.  I am getting good vibes in your favor.  

Love ya triplet.

You have every right to feel sorry for yourself, reminds me how I felt a year ago December when I found out that I had breast cancer. I was putting up Christmas decorations and when I got the call I sat in my chair in the family room and just cried for 3 days. Then I put my big girl panties on and met with the surgeon to find out what my options were.

You can feel sorry for 3 days, then cry your tears (I cry easy, you might not) then it will be time to fight back, mentally and emotionally. I know that you are a fighter and they did a grave disservice to you and then by association to myself, Lynn and everyone else that they are prematurely taking away our hope.

I am wondering what Lynn will have to say about this, I will be interested in finding out.

Love ya back, triplet

Dianne

I too cry easily.  Since we lost our daughter going on 9 years in Nov.  tears come pretty easy.  You are right, feel like wind knocked out of me.  I can say with certainty that I will be a basket case when I see pain mgmt. as we have a close relationship.  Ugh. But I will come back strong as ever.

Take care triplet  Good Luck tomorrow will be interested to read what your rep has to say.

Dee

Dee, I know that we have talked after this post but I just reread your post here. I am so very sorry that you lost a child, I can't even imagine how hard that must have been and still is. I know that there is nothing that I can say or do to change that but I do want you to know that I care.

Sending hugs to you and your family,

Dianne

Thanks Dianne.  With that loss it puts everything in perspective.  I just want some answers.  I was glad your rep say many more settings.  Sounds like your rep isn't giving up on you.  I shall see what shakes on the 23 surgical visit again.  Glad my hubby is going to this one.  Hmmmm maybe I'll just sit back and let him handle this visit.

He is a very quiet, easy going person.  Not much lately watching his wife hobble from point a to point b.  Maybe his perspective might give different insight.  We shall see.  I shall keep you posted.

Dee

Hi Dee, it is so good to hear that they are finally giving you a new Rep, well it is about time that they listen to you and give you a new Rep. Please let us know when you hear from a Rep and when you will be getting an adjustment. 

I have lost contact with the amount of adjustments that I have had, seems like 4 or 5, my husband thinks that I have only had 3. Either way I don't think it is working yet for men but I still have hope that it will work. I met with my Neurosurgeon on Monday and he said that my incisions had healed nicely. I have been approved to go back to physical therapy and water therapy. I am hoping that the water therapy will help with my movement and then my pain will be lessened, at least I hope it will.

I do wish you luck and I am hoping that you will be getting a lot of relief real soon.

Dianne

Hi Dianne.  Guess we might and hopefully will turn the corner.  The PA was surely not a happy person.  I again asked why not the paddles instead of the paddle.  The answer was only in certain circumstances.  I said maybe I might wind up being that certain patient.  I am still waiting for the phone call.  If I don't hear today, will call again tomorrow.

Hope you are feeling better.  I, too, got the green light to get wet.  I may call the place thatvwe belong too and see what free pool time there is.

Happy splashing.  Hope Lynne is doing well.  Haven't seen her on here.  I am going to take a nap 😴 as Andy is at Church as we need coverage every day for the adoration.  He volunteered.

Keep me posted on how you are doing.  Maybe at some point, we can look back and all this will be a distant memory,

Dee

Hi Lynn.  Hope your appointment went well.  I again asked about the leads.  I keep getting the same blasted answer phrasing here, "Used in special cases only."  I responded and looked them in the eye with watery eyes, "Well maybe after all is said and done I am that special person."    I said I will give it more time with the new rep.  But between you me and the wall you might be looking at, I truly believe this is not going to work.  I don't know when, next week he will will contact me.  All the while, I'm thinking here we go again loooooong time between visits.

Lynn, I used you as my poster patient, for using the leads in permanent implantation.  They always seemed shocked that there are even people who have medical expertise getting what was used in the trial.  Even said, thanks to a Dr. Who has the leads permanently implanted is getting relief, and those of us who have the damn paddle aren't.  If I knew I remotely had a chance of using the leads, we might not be having this conversation.  Very quiet after that diatribe.  LOL. Good hubby also said to them,and did not mince his words, that this is a big money maker for the rep with a big commission.  He got paid, so now find out what else is the cause of your pain.  Pfffft.  

I got my OR report.  Interesting read to say the l least.  As I read through, kept Wikipedia on another tab, while I looked up words or procedures I did not understand.  I think the biggest eye opener was that when the paddled was supposed to be at T11/T12 and it wasn't going to fit.  A break to think ou the box, and they moved it to full T9 and top part of T10.  .

I will keep you posted of what happens next.  Lynne hope your neck pain eases up.  I will be going to the pool and try walking.  My pain mgmt. Dr. Is leaving.  (sigh).--------Dianne hang in there.

Dee

 

Hi Dianne and Lynne and all.  I now have a new rep. from Abbott to work with me.  We met this morning for over an hour.  We talked for awhile so he could get a feel for where I am and where we have been.  He took the programming back to square one which was fine with me.  He likes to program his clients while they are lying down.  That was painful as those exam tables are not the most comfortable.  After 20 mins.  I asked to stand so that worked out better.  He went through many variances.  We settled on one and will let him know in 5 days the results....good bad or painful.  

We left off if the pain gets worse call him right away.  The pain in my back throughout the day was awful.  Used an ice pack most of the day lying in a prone position.  I believe the pain is from all the upping the stim to find the coverage in the right spot.  I think we are close to the right area.  So now itba wait and see.

Keeping my fingers crossed.

Hope you are all doing better.

Dee

Dee I am so happy that you stuck it our and have a new Rep that seems to be willing to go to the mat for you. I really hope that you will start to finally get some pain relief. It is about time that all of this run around stops. I told someone this week that if they didn't get some help that they should take it to the local or national news.

I don't want to sound too excited but I think that my pain is getting a little better. I have been a little more active and I have been staying out of bed for longer periods of time. I am going to hold off having anymore adjustments to see if this is has indeed given me at least the magical 50% reduction in pain. We shall see.

I was cleared to return to water therapy, BUT, I am going to have another surgery. My left wrist started hurting about a month ago and it has gotten worse and worse. Today I had an appointment with the Orthopedic Surgeon who operated on my right wrist a couple of years ago. I had De Quarvains and the surgery was extremely painful. He said that I had the worst case that he had ever operated on. It really took a year before it quit hurting. He had to open up my wrist, the side by my thumb, he moved a nerve and scraped the bone. Ouch.

Well now I have De Quarvain on my left wrist, I am super bummed about it. I am going through the process of all of the hoops to be operated on to satisfy the insurance company. It looks like I might get operated on around June 26th or so. I am hoping that it won't take a year to heal this time.

I need to decide whether I want to start back at water therapy until my wrist surgery or just wait until my wrist is well enough to get back into the water.

I had my pity party today sitting in the car while my husband was in the grocery store. This will be my 10th surgery in the past 6 years. 

I am visualizing you and all of us being without pain and rejoining life again.

Good grief woman another surgery.  Owie. Pray this is easy peasy.  

Be well ill my friend.  Nap time and pill time.  Talk again soon.

Dee

oops.  There should be no word after well.  Lol

Thank you Sweetie, we shall overcome, we have no choice but move on and find the answers for our health. I'm not looking forward to having another surgery so close to having my SCS put in. I am just hoping that my de Quarvains in my left wrist won't be as bad as my right one was. I guess that all of my pain sensors will be moved from my back to my left wrist.

Please let us know what is going on with your Rep and your back. Have a restful nap and get reenergized.

Hi Dianne.  UPDATE. Am meeting with the surgeon next Thurs 7/27 to discuss the removal of the St. Jude Stimulator.  It is not nor has it ever worked as you well know.  Met yesterday with a new pain mgmt.  Dr.  His take is that the paddle is not in the right place to alleviate the pain in the right hip and down the leg.  He feels from his speciality a few injections to find the correct area for pain relief, then burn the correct nerves to stop this pain.

In reality the problem could get worse,  I understand the reality of this and am willing to chance that.  I feel, at this point in time, I have no other option, unless the surgeon does.  

The new rep, also, has not returned my updated text of 7/11 after my reprogramming on 7/6, that stated the new program is not working.

So this is where it stands right now 7/20.  I hope you and Lynne are doing much better. 

I hope all who have have commented on my discussion have had some positive results.  Good luck to all in your journey for pain relief.

Dee

I am so sorry that you are still having so much pain, you have had such an awful time. I had my de Quervains surgery on the 10th and I went back to the orthopedic Dr today and took off all of the the bandaging off. I have a molded brace on my hand/wrist/arm now. It is very stiff and very uncomfortable but with all that we have gone through it isn't so bad. I was hoping that I would be getting the go ahead to go back to water therapy for my back but I have to wait for 3 more weeks when I go back to the Orthopedic Dr.

My back has taken a back seat to my surgery for de Quervains because it sends out a lot of nerve pain, like shocks. Last night I didn't get very much sleep because of the nerve pain. I am hoping that it will diminish soon.

I have been trying to cut back on my pain meds for my back, I think that the back pain has been reduced so I guess that I might be one of the lucky ones. I don't have much energy and when I do very much I get worn out and have to return to bed. Since I had an appointment with my Orthopedic Dr which is about a 45 minute drive, then lunch and the drive home I got worn out. So once again I am laying in bed.

Do you plan on having another pain stimulator put in with the paddles in the correct place? I a;m not thrilled with my Reps but they are gold compared to yours. I am so sorry Dee.

Please keep us up to date on how yours goes, I haven't heard from Lynn in a long time. I hope that she has been able to get some relief too. Take care.

Dianne

Thanks Dianne and am sorry you are having two nerve issues to deal with.  I hope they turn around for you.

no more implants.  When this comes out, I am done.  No more surgeries.  3 back, 1 stim. is more than I can handle physically or mentally.  I am through with St. Jude.  I will never recommend their product.  I am awaiting a reply by phone from their ethics and compliance division.  If I do not hear from them, then it will be written up and sent to the CEO via certified mail.  

Again life will go on only without a nerve stimulator for me.  I again wish all the best.  My pain mgmt. Dr. Thinks Scientific model and NEVRO are better.  The NEVRO never worked in the trial, but their reps.  we're far superior than my encounters with Abbott's.  

Well ill my friend go and rest and feel better soon.  Keep me posted.

Dee